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life with Down syndrome and Sotos syndrome!~~~~ Perfectly normal lives!

Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))

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Sunday, October 2, 2011

God bless you!! Thank you!!/ routines

Today we received another wonderful donation for our boys Noah-Moses and Jacob!!! (on our Family Support Page)

Thank You!!! God bless you!!!

It is a huge thing we never ever take for granted! We know how heart felt the donations and prayers for our boys are! We are humbled!

Thank You!! So much!!! (((HUG)))*******************************This is our last week up north and today we realized something! Julius & Pauly do NOT like their routines changed at all!! I imagine the orphanage was run on a tight schedule.

Every morning when we wake the boys up, Pauly wakes up slowly, Julius wakes up quickly ready for the day. They look for Dad.Tom takes one boy at a time out to the bunkhouse and changes his diaper and feeds him. Then he brings him back and gets the next boy. The boys love this, and it frees me up to feed everyone else. But sometimes Dad has to do something else. So I feed them instead. And they are not happy about it at all. They eat like they "don't know how" and they are upset! Very passive aggressive behavior! They want to know who will feed them and when. They like a strict routine! And they don't like it changed!

Most mornings the boys like to eat a little milk and yogurt, they aren't big morning eaters. They do not like cereal of any kind- or eggs-or pancakes. At lunch they like oatmeal with a variety of cooked things chopped into small swallowable bits. Veggies, soft fruits- mixed in. At dinner they like noodles or bread with meat and butter, drizzled with homemade soup broth. The broth makes the bread very soft. They hate rice and firm bread, cheese and brown sugar, crackers. They don't chew and they don't suck- they swallow! When we get home we are going to try those toddler cookies and "first" eater things. We want them to learn eat on their own. To tell us what they'd like to eat! ;o) Rather than just swallowing or spitting out what we feed them!

Our Samson did chew, he was 3 when he joined our family. but he chewed bites too big. And if he didn't want to eat something he let it conveniently "fall" from his mouth. But he liked all foods! We made a sign that said "Please don't feed the bear" because he opened his mouth for anything!! :o)

The boys are very particular about toys too. Julius loves his magnetic drawing board. He likes to "draw"! He also likes a toy that lights up with stars and plays music. He wears out battery after battery with that toy as it plays over and over! Pauly likes his soft toy- Mr. Caterpillar/Worm. We have him sleep with it, then he can chew on Mr Worm instead of drooling and chewing his hands. He also likes his soft pastel Mickey mouse and a soft giraffe. He will chew or drool on his colorful teething ring too. Both boys tend to "manipulate" their toys rather than play with them. We show them how to play each day and it kind of goes over their head! Before this they weren't interested in anything. I think they should hopefully imitate us soon.

The boys are with us all day, even while sleeping and napping. This way they don't get overstimulated by having to do things with us. They can just watch us. We've noticed each day they open up a little more, they try new things just by spending so much time with us. The only difficulty we have is when their routines are changed! Then they regress and ignore us! They become introverted again. Mornings usually refresh them and they "forget" they were upset. We have to make a more conscious effort to change their routine more often in small ways. We don't want them to become dependent on it. Routines-life, things change. They need to learn this too! :o)

Sometimes it's overwhelming how much they don't know, and overwhelming that they can't tell us or show us what they do know.